My Nonprofit Reviews

Wildaisy

PANDORA Org says it serves patients, but the only people it really serves are its officers and staff. They have sold out the interests of patients again and again. Right now they are serving their own interests against those of real patients in order to have a "seat at the table" when the US government redefines ME/CFS. Real ME patients know that PANDORA lies http://www.mecfsforums.com/index.php/topic,18375.msg156941.html#msg156941

This organizations says it represents the interests of people with "CFIDS." Maybe it does. CFIDS is a wastebasket diagnosis that includes people who are simply tired or depressed. However, the disease from which I suffer is Myalgic Encephalomyelitis (M.E.) which is a much more complex illness, with both physical and cognitive symptoms. The symptom of overwhelming fatigue is only one symptom in many. M.E. is defined by the International Consensus Criteria. (http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/abstract ).

Most recently, on August 8, 2014, the day set aside by M.E. patients to recognize the existe.ce and needs of patients with Severe ME--Severe ME Awareness Day--this SMCI chose to publicize an article about vacationing while ill. This is a ridiculous slap in the face of every real ME patient. I would like to have made my comment directly to the CAA/SMCI, but they have blocked me from posting there.

If CAA/SMCI actually represented real patients in the past, it does not do so now. Now it is only interested in maintaining the extraordinarily high salaries and benefits of some of its employees and perpetuating the existence of the organization.

These people should be ashamed to be pretending to represent this neglected patient group. They could at least be honest and rename their organization to something which reflects the fact that they really represent tired and depressed people, not people who actually suffer from the all-too-real illness of Myalgic Encephalomyelitis.

When was your last experience with this nonprofit?

This is actually a blog with an internet forum attached which belongs to one individual. I would like to see the financial reports. If Phoenix Rising actually does any charity work, I have never seen it.

When was your last experience with this nonprofit?

I have been suffering from Myalgic Encephalomyelitis (also called Chronic Fatigue Syndrome) for 30 years. For the last ten years, the CFIDS Assn. of America has served its own interests (large executive salaries and special benefits) rather than the needs of people who suffer from M.E. They continue to misrepresent the serious and life-destroying nature of the illness as merely annoying. They spend the available research money on psychological research rather than researching the physical cause of this very real illness. They are now advocating Cognitive Behavior Therapy and Graded Exercise Therapy for the physical illness which has disabled me and now keeps me bedbound. Further, they refuse to answer questions from M.E. patients about where they get their funding and how they spend it. They are much worse than unhelpful to M.E. patients; they are actively harming us.

How do you feel you were treated by this organization?

When was your last experience with this nonprofit?

I wrote a glowing review of WPI several months ago, but that was before they fired the only real scientist at their Institute. When they did this, they demolished all hope of any real research coming out of this little Institute. Now it appears their main interest is in making money for the Founder, whose husband is now under investigation by the FBI and who is being sued by his former partners for embezzling millions of dollars. These people havedestroyed any semblance of respectability for themselves or their institute. I certainly want nothing to do with these people ever again, and I will tell everyone I know to stay away from them.

How do you feel you were treated by this organization?

When was your last experience with this nonprofit?

The situation at the Whittemore Peterson Institute has changed. They have unfairly fired the researcher who was making huge strides toward development of effective treatment for M.E. and it appears they have lost their way entirely. Now they are indicating that they will try to keep the NIH research grants which had been awarded to them because of this star researcher, Dr. Judy Mikovits, and they have no one qualified to continue the research. If they keep the grants, they will effectively end this promising research.

It certainly appears that WPI is now more interested in setting up their clinic and their commercial lab to make money than they are in continuing the research which had the promise of effective treatment for people such as me.

This is a huge disappointment. I no longer feel that WPI is worthy of support.

Role: Client Served & I have been ill with Myalgic Encephalomyelitis (M.E.), a major neuroimmune disease. WPI says it serves those of us who suffer with M.E., but now it appears to have become an obstacle to getting us help.